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LP 5 Parker - The Best Possible Child

LP 5 Parker - The Best Possible Child
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  REPRODUCTIVE ETHICS The best possible child Michael Parker  ...................................................................................................................................  J Med Ethics  2007; 33 :279–283. doi: 10.1136/jme.2006.018176  Julian Savulescu argues for two principles of reproductiveethics: reproductive autonomy and procreative beneficence, where the principle of procreative beneficence is conceptualisedin terms of a duty to have the child, of the possible children that could be had, who will have the best opportunity of the best life. Were it to be accepted, this principle would have significant implications for the ethics of reproductive choice and, inparticular, for the use of prenatal testing and other reproductivetechnologies for the avoidance of disability, and for enhancement. In this paper, it is argued that this principleshould be rejected, and it is concluded that while potentialparents do have important obligations in relation to theforeseeable lives of their future children, these obligations arenot best captured in terms of a duty to have the child with thebest opportunity of the best life. .....................................................................................................Correspondence to:Professor M Parker, TheEthox Centre, Department of Public Health, University of Oxford, GibsonBuilding/Block 21, RadcliffeInfirmary, Woodstock Road, Oxford OX2 6HE,UK; Received 23 June 2006Revised 23 June 2006 Accepted 26 June 2006........................ The place where no harm can come is the place where nothing at all can come. 1 In 2001, Sharon Duchesneau and CandyMcCullough, a deaf lesbian couple living inWashington DC, had their second child, Gauvin. 2 Like their first, Jehanne, he was born deaf. The women, who wanted to have a deaf child,conceived Gauvin through artificial inseminationby donor, using sperm from a friend they knew tohave five generations of inherited deafness in hisfamily. 3 Initially they had approached a localsperm bank but were told that congenital deafness was one of the conditions that ruled out would-bedonors. In an extended interview in theWashington Post, 1 Sharon and Candy gave severalreasons for their decision to have a deaf child. Theyargued that: N  deafness is an identity, not a medical afflictionthat needs to be fixed; N  the desire to have a deaf child is a naturaloutcome of the pride and self-acceptance manypeople have of being deaf; N  a hearing child would be a blessing, whereas adeaf child would be a special blessing; N  they would be able to be better parents to a deaf child than to one who could hear;and N  the child would grow up to be a valued memberof a real and supportive deaf community.The concept of ‘‘deaf culture’’ has been dis-cussed extensively by deaf people and in theacademic literature. 4 Notwithstanding the intrica-cies of this academic and political debate, however,Sharon and Candy seem to have had a moreeveryday community in mind. For, both womenlive close to Gallaudet University in Washington(, the world’s first lib-eral arts university for the deaf where most of thestaff are deaf and most staff and students andtheir families live nearby creating, according to theWashington Post, something that might be called adeaf community in the everyday sense of the word.The reproductive choices made by Sharon andCandy raise a number of important moral ques-tions: is there a moral duty to have a healthy childin situations where there is a choice? 5 If so, what isto count as healthy and/or disabled and who is todecide in any particular case? 6 What, if any, are theappropriate limits of reproductive freedom? 7 Whatare the appropriate relationships between personalmorality, professional ethics and regulation inreproductive decision-making? In a paper discuss-ing the ethical issues presented by this case andtheir implications for reproductive medicine morebroadly, Julian Savulescu proposes two principlesof reproductive ethics. 8 He calls these principles,reproductive autonomy and procreative benefi-cence. Following Robertson, 9  who uses the termliberty rather than autonomy, Savulescu arguesthat, in their reproductive decision making, peopleshould be ‘‘free to do what others disapprove of or judge wrong, provided the exercise of freedomdoes not harm others’’ (see Savulescu, 8 p 771). 10 Inthis he also follows John Stuart Mill, who arguesthat  As it is useful that while mankind are imperfect there should be different opinions, so is it that there should be different experiments of living:that free scope should be given to varieties of character, short of injury to others; and that the worth of different modes of life should beproved practically, when anyone thinks fit to try them 11 Savulescu’s second principle, procreative bene-ficence, 12 requires that potential parents choose, of the possible children available to them, those withthe best opportunity of having the best life. Inrelation to genetic testing for example, he arguesthat, Couples should employ genetic tests to have thechild, of the possible children they could have, who will have the best opportunity of the best life. (see Savulescu, 8 p 771)  Abbreviation:  PGD, preimplantation genetic diagnosis279  It is important at this stage to point out that, like Parfit 13 andRobertson, Savulescu is not arguing that choosing to have achild other than the one with the best opportunity of the bestlife is to harm that child. A child who is born deaf is not harmedby his or her parents in cases such as the one above because noalternative, better, life is available to that child. i If Candy andSharon had chosen to use sperm from a hearing donor, theresulting child would not have been the same child without thedeafness. It would be a different child. If the child has no way to be born or raised free of that harm,a person is not injuring the child by enabling her to be bornin the circumstances of concern.’’(see Robertson, 9 p 75) This raises the question of what is meant by the termprocreative beneficence and what work the principle can besaid to be doing in reproductive ethics if it is not concerned with the avoidance of harm to people? Like Parfit andRobertson, Savulescu takes the view that even where there isno harm to the resulting child, there may be circumstances in which it would be reasonable to say that the parents would be wrong to have a particular child. Robertson captures this asfollows: …one may still morally condemn giving birth to offspring insuch circumstances. Derek Parfit captures this point well inhis example of a woman who is told by her physician that if she gets pregnant while on a certain medication she will givebirth to a child with a mild deformity, such as a witheredarm, but if she waits a month, she can conceive a perfectly normal child. If the woman refuses to wait and has the child with the withered arm, she has not harmed that child,because there is no way that this particular child could havebeen born normal. Still, many would say that she has acted wrongly because she has gratuitously chosen to bring asuffering child into the world when a brief wait would haveenabled her to have a normal, though different, child. Now one could argue that her action is morally justified by the net good provided the child born with the withered arm.However, if one concludes that her actions are wrong, it isnot because she has harmed the child born with the witheredarm, but because she has violated a norm against offendingpersons who are troubled by gratuitous suffering. (seeRobertson, 9 p 76) For Savulescu, then, as for Robertson, potential parents havea duty to have the child with the best opportunity of the bestlife, not because to fail to do so would harm the child, butbecause they have a duty to bring about the best lives they can.While the case of the deaf lesbian couple may seem ratherunique, practical ethical questions about the limits of autonomyand beneficence arise frequently in the day-to-day practice of reproductive medicine and these questions are of significantethical importance in practice and policy. Examples mightinclude, situations in which women request prenatal testingand termination of pregnancy for what are sometimes calledminor conditions, and situations in which decisions are beingmade about suitability for access to assisted reproduction 10 orabout the use of preimplanation genetic diagnosis (PGD).Consider the following case: ‘‘Rachel is going through in vitro fertilisation because she wants to have a child but is infertile. Unrelated to the cause of her infertility, Rachel is an unaffected carrier of x-linkedspondyloepiphyseal dysplasia tarda (SEDT). As a carrier,and because the condition is x-linked, Rachel has equal 1 in4 chances of: an affected son; an unaffected son; a carrier daughter, and a non-carrier daughter. She is considering whether she should use PGD to test the embryos for SEDTand only implant unaffected or non-carrier embryos. Doesshe, she wonders (having read Savulescu), have a moralduty to use PGD to choose the ‘best possible child’ ?  Becauseit is x-linked, SEDT only affects males. At birth, affected boysare of normal length and proportions and reach normalmotor and cognitive milestones. However, between 5 and12 years of age their linear growth is retarded with the result that their final adult height is usually between 4’10’’ and5’6’’. They have a short trunk and barrel shaped chest. Affected men tend to get some back and joint pain, andsome osteoarthritis and restricted joint movement. In some,but not all, cases, early hip replacement (eg in the 30s) andpain management, is required. In majority of cases,however, care is mostly ‘support’ and advice to avoidcertain occupations—for example, those that involve stresson the spine. They have normal intelligence and lifeexpectancy. 14 To what extent should everyday reproductive decisionmaking in cases such as this be guided by Savulescu’sprinciples? Is there a duty to have the child with the bestopportunity of the best life and, if so, what does this mean insituations like the one facing Rachel? The cases above are bothones in which, at first glance, on a standard bioethicalinterpretation a conflict might be said to exist betweenreproductive autonomy and procreative beneficence—that is, while respect for autonomy requires Sharon’s choice to berespected, and for Rachel to be free to choose the embryo she wishes to implant, concerns about beneficence require theavoidance of deafness or short stature. The question raised bysuch cases on this interpretation is when, if ever, doesprocreative beneficence justify the overriding of autonomy—for example, by refusing Rachel access to PGD? On Savulsecu’saccount, however, the scope of application of the two principlesmeans that there is no practical or theoretical conflict, for whilereproductive autonomy is concerned with the limits of regulation and paternalism in professional practice, procreativebeneficence, because no child is being harmed, is concernedsolely with personal morality. This means that it is consistentfor him to argue, as he does, that while reproductive autonomymeans that it would be wrong for the women to be stoppedfrom making the choices they wish to make, it would in fact(because of the principle of procreative beneficence) be morally wrong for them to choose to have a deaf or short-statured child when they could avoid this. They should choose, of the possiblechildren available to them, the child who will start life with thebest opportunity of having the best life, even if no one has theright to impose this choice on them. The choice to have adisabled child is wrong for Savulescu, as we have seen, notbecause it would harm the resulting child, but because it is tobring about a worse life than could have been the case. In whatfollows, I shall argue that while I agree with Savulescu thatpotential parents such as Sharon and Rachel have importantobligations of beneficence when choosing between the bringingabout of different possible lives, the concept of a duty to havethe child with the best opportunity of the best life, combined with the separation of the personal from the social, is not acoherent way to capture such obligations. The principle of  i  An exception is when the condition is so bad that it would be better not tohave existed at all, but these situations will be rare.280 Parker  procreative beneficence, where this is taken to imply a duty tohave the child with the best opportunity of the best life, isunderdetermining, paradoxical, self-defeating and overly indi- vidualistic. The principle of procreative beneficence isunderdetermining Moral principles require interpretation if they are to be appliedin particular cases. 15 The minimum requirement for the mean-ingful application of Savulescu’s principle of procreativebeneficence is that it should be capable of ranking possiblelives as better or worse, 16 not only in the sense that, say, a‘‘hearing’’ embryo will be more likely to grow into a child whocan hear better than one who is deaf, but also in relation toconcepts involved in the understanding of a life as the bestpossible life. The key concepts requiring interpretation for theapplication of the principle in this second sense are, to say theleast, highly complex. Not least complex among these is theconcept of the best life itself, which can moreover have ameaningful use only in relation to other similarly rich andcomplex concepts such as those of the good life, humanflourishing, well-being and of what it is that makes lives go well. This is not to suggest that the significance of theseconcepts would need to be established before that of the bestlife could be understood and used as the basis for interpreta-tion, but rather to highlight the fact that any coherent use of the principle of procreative beneficence in ranking possible lives would unavoidably involve ranking the characteristics of, say,embryos, in relation to a cluster of complex, rich andinterdependent moral concepts. This is not possible for tworeasons. The first of these arises from the very fact that complexconcepts, such as those of the good life, the best life, andhuman flourishing, are not reducible to simple elements orconstituent parts which might be identified through the testingof embryos.There are several inter-related reasons for doubting thepossibility of reducing the good life to simple elements of thiskind. Firstly, if we take a moment to consider our own lives,those of our friends and family, or perhaps those we have readabout, such experience tells us that it is extremely difficult inadvance, and perhaps also even in retrospect, to say with anyprecision what it is, or was, that makes (or made) a life go well.Is it true, for example, that a life free of troubled interpersonalrelationships, free of suffering, loneliness or misunderstandingis a better life, or even, taken as a whole, a happier life, thanone in which experience of these to at least some degree hasplayed a part? 1 Is it true to say that the good life is the life freeof any illness, disease or misfortune? 17 To ask these questions isnot of course to suggest that nothing at all can be said about what makes a life go well or badly, nor is it to suggest thatmisfortune is a good thing. It is rather to reflect upon the factthat while it may be possible to delineate some conditionsconducive to good lives, it is not going to be possible to relatethe testable features of embryos in any useful or determinativesense to concepts as rich and complex as that of the ‘‘good life’’,thereby enabling the ranking of possible lives as better or worse. This means that the concept of the ‘‘opportunity of thebest possible life’’ is inevitably underdetermining.Part of the indeterminacy of such concepts in relation toreproductive choice arises out of the fact that their meaningsare sustained by and transformed within complex and relativelyfluid social practices and spaces. This means that, even if it waspossible, the interpretation of the duty to have the best possiblechild would emerge within intersubjective and sociallyembedded discourses about human flourishing and about whatit would mean for a life to go well, and there is good reason tothink that in any, even moderately, diverse community, nosingle, agreed concept of the best possible life is going to bepossible or desirable. This leads to the second reason why it isnot possible to rank embryos in terms of their relationships with the best possible life. This is because, even if it werepossible, which I have argued it is not, to identify a number of key elements that might be said to be features of the best life,the diversity of preferences for, and beliefs about, the relativeimportance of what would inevitably be an extensive range of such elements, combined with the variety of their possibleinteractions means that it would not, even in theory, bepossible to identify the rational choice with respect to anyparticular feature of an embryo or a possible child. 18 What these two arguments mean, taken together, is that it isnot possible to specify in any particular instance what would beinvolved in making a reproductive choice that respects theprinciple of procreative beneficence. This is not of course tosuggest that nothing can meaningfully be said about theconditions under which a good life would be more or lesslikely, 19 or even to suggest that there could be no coherentconcept of procreative beneficence. But it is to gesture towardsa very different kind of principle of procreative beneficence, one which means that rather than having a duty to have the child with the best opportunity of the best possible life, those who arecontemplating pregnancy have an obligation to consider care-fully whether it is reasonable to expect that the child they arethinking of conceiving is going to be born under conditionsconducive to the possibility of a ‘‘good life’’. What thesearguments have also highlighted is the fact that the conditionsconducive to the possibility of a good life are at least as much todo with the broader social, political, economic and environ-mental contexts in which people live as they are to do with theirbiological make-up, or the make-up of their family. This is anissue to which I return later in this paper. The concept of the best possible child is paradoxical In  All’s well that ends well , Shakespeare has a minor characterspeak the following lines: The web of our life is of mingled yarn, good and ill together;our virtues would be proud if our faults whipp’d them not,and our crimes would despair if they were not cherish’d by our virtues. 20 In this, Shakespeare is not simply reminding us that humanlives are by their very nature characterised by both good and ill,and that we must learn to live with these aspects of ourselvesand of those around us. He makes the stronger and ultimatelymore interesting claim that both strengths and weaknesses of character, and of our lives more broadly, are essential andinterdependent elements of the good life. Both aspects of ourlives are interwoven, and indeed it is this interweaving and ourstruggles with it that make us what we are and constitutes inits interplay of light and dark much that is of value andsignificance in human existence. In these lines, as in so manyothers, Shakespeare captures something profound and, onceagain, complex about human existence and in particular aboutour relationships with ourselves. For he suggests that it is onlythrough recognition of the fact that we are in our nature and inour particularity both light and dark that we come to feel bothan appropriate humility and a sense of genuine self-worth. It ishere too that we forge our identity.What Shakespeare helps us to see then, is that in addition tobeing underdetermining, the concept of the best possible life isdeeply paradoxical. The best possible life is not necessarily andindeed could not be one in which all goes well. The bestpossible life is not necessarily, indeed could not be, one lived bya person with no flaws of character or of biology. This is not tosay that the best possible life would be one in which a certain The best possible child 281  number of character flaws were thrown into the mix—forexample, through PGD—but rather once again to highlight thecomplex, organic and profoundly paradoxical nature of thegood life and of human flourishing.The lesson to be learned from Shakespeare here is one thatcomplementsinsignificantwaystheconclusionoftheargumentsabove—that is, that the principle of procreative beneficence isunderdetermining.For it suggeststhat while itmay bepossibletospecify some conditions without which a life, any life, would beunlikely to go well, and while it may be possible in retrospect tosayofalifethatitwasagoodone,livedwell,thegoodlifeisgoinginevitablyinallcases,whateverelsemightbetrueaboutit,tobeamingled yarn of good and ill together. The pursuit of the best possible life is self-defeating The arguments set out above have raised significant doubtsabout the possibility of specifying in advance, or even as a lifeprogresses, in any objective way, whether it constitutes a goodlife, let alone the best possible life. Firstly, there will in mostcases be legitimate disagreement and uncertainty about whatconstitutes the good or the best and, secondly, on any coherentaccount the good life will inevitably involve a complex of goodand ill together. These two arguments hint also at a third. Forthey suggest that the active pursuit of the best possible life willbe likely in practice to be disorienting. For, if we take seriouslyShakespeare’s evocation of the breadth, depth and paradoxicalcomplexity of what it means to live a good life and also theinevitability of genuine uncertainty, the pursuit of the bestpossible will always be in important respects quixotic andunlikely therefore to be conducive to the good. A different way of capturing this insight, in consequentialistterms, would be to argue that any consideration of the good life would need to factor in the effects of perfectionism itself, and itseems very likely that the active pursuit of the best possible ineach and every aspect of one’s life, including the selection of thecharacteristics of one’s offspring, would not only make it lesslikely that the best possible would be achieved but might alsomake even the achievement of the good enough difficult. For,as none of us can be sure that we are living the best of allpossible lives, the pursuit of the best possible, as opposed to thepursuit of the good, would be bound to lead to a life of dissatisfaction with any life as lived and to a constant drive forself-improvement which would inevitably be both exhaustingand unlikely to lead to stable, satisfying or deep interpersonalrelationships. From a consequentialist point of view, therefore,it is not impossible that the right thing to do would be toeschew the pursuit of the best possible. The principle of procreative beneficence is overly individualistic The argument that there is a duty to select the child with thebest opportunity of the best life should be rejected. Savulescu’saccount of procreative beneficence is underdetermining, para-doxical and self-defeating. This should not however be taken toimply that beneficence should be abandoned altogether as animportant moral dimension of reproductive choice. For, whilethere is every good reason to reject the pursuit of the bestpossible life, this is, as I have indicated above, very far fromarguing that nothing at all can be usefully said about thefactors which contribute to the conditions under which it ispossible for a life to go well. And, if it is possible to saysomething meaningful about the kinds of things that make thispossible, beneficence will have a role to play in reproductiveethics and potential parents will have an obligation to ensure,insofar as this is possible, that any child they have has areasonable chance of such a life. This is a useful reminder that what is being rejected in this paper is only the pursuit of thebest possible and not the obligation to ensure, insofar as this ispossible, conditions for the possibility of a good life.Mill, while calling for experiments in living, also argued thatthere ought to be limits to such experiments, drawn on thebasis of our understanding of the kinds of things that make itpossible for a life to go well. The fact itself, of causing the existence of a human being, isone of the most responsible actions in the range of humanlife. To undertake this responsibility- to bestow a life whichmay be either a curse or a blessing- unless the being upon whom it is to be bestowed will have at least the ordinary chances of a desirable existence, is a crime against that being. (see Mill, 11 p 177) Our understanding of what it means for a life to go well isrelated to our understanding and use of concepts such those of the good life, of ‘‘human flourishing’’ and of the things thatmake a life go well. These are complex and interdependentconcepts in which meanings are sustained and transformed within the practices of social and linguistic communities, andthis implies that the interpretation of the implications of beneficence—that is, the assessment of whether any particularpossible child has a reasonable chance of a good life—will beinseparable from relatively complex intersubjective and socialpractices and values. It is an implication of this that, just asconceptions of the good vary between individuals, families,communities, etc, so too will legitimate beliefs about what itmeans to secure the conditions for the good in particular cases,and this implies that procreative beneficence will generatesomewhat different obligations in different contexts.This is not to suggest that the conditions for the possibility of the good life are, however, subjective. For while havingsubjective features, what counts as the good in a particularcase, will be meaningful and reasonable only within the contextof discursive rules, including rules of justification, of thecommunities within which it is being used as a justification.In addition to being non-subjectivist, this is also anon-relativist position. The morally significant practices of com-munities, societies and individuals can themselves be criticised onthe grounds of beneficence in at least some cases. For there are atleast some respects in which the conditions into which a child would be born can be said objectively to be conducive to thepossibility of a good life 21 and what this means is that a coherentaccountofprocreativebeneficenceis,inadditiontorecognisingthesocial aspects of procreative beneficence, going to be one thatallows space for consideration of the objective conditions requiredfor the possibility of flourishing of any human life. 19 Related to this, any coherent and relatively comprehensiveaccount of procreative beneficence must also be capable of taking seriously the fact that large numbers of women have nochoice other than to bring children into a world of abjectpoverty, and the absence of anything approaching adequatehealthcare. The fact that reproductive autonomy is a myth formany women is a reminder that, just as it is not possible toseparate obligations of procreative beneficence from socialcontext, neither is it possible for an adequate or coherentaccount of procreative beneficence to avoid issues of globalinequity or politics. The obligation of procreative beneficencehas intersubjective, social and political dimensions, whichextend to beyond the family and the choices of individuals. A coherent, reproductive ethics will, as a consequence, be one thattakes the social and the political extremely seriously. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE In response to the case of Sharon Duchesneau and CandyMcCullough, Julian Savulescu argues for two principles of  282 Parker
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